Joint Standing Committee on the National Disability Insurance Scheme

PO Box 6100 Parliament House Canberra ACT 2600

Independent Assessments Submission

9th April 2021

To Whom It May Concern,

I write to you as a parent of a child participant in the NDIS as well as Board Member of a not-for- prefix profit supporting people with motor neurone disease (MND), their carers and families.

I implore the Government to immediately abandon the proposed Independent Assessments.

My perspective is unique and informed by lived experience as a parent of a child with disability as well as a Board Member working to support adults with disability.

I am deeply concerned about the legitimacy, intent and overall outcomes of the proposed independent assessment as well as the lack of alignment with the original model proposed by the Productivity Commission and Tune Review.

Before addressing the Terms of Reference, I would like to share my lived experience as a parent of a child with disability.

I am the parent of a delightful, intelligent, creative and much-loved son.

My son is autistic and has severe anxiety and depressed mood.

On a good day, when I have anticipated, pre-empted and planned every scenario, my son is calm and happy.

On a more challenging day – where his needs have not been met and his anxiety has escalated - my son can react in panic. This can mean violence, avoidance or shut down.

I am unable to reliably plan my days or commit to work as my son’s needs from one day to the next are unpredictable.

My son cannot attend school full-time. He is prone to anxiety and anger and externalises these feelings, often hitting or yelling at other children or educators. Other days he can be calm and happy and engage like many children.

My earning capacity has been reduced to almost nothing. Prior to my son’s birth, I was a company Director of my own lucrative company. I have since been unable to work and have become dependent upon my husband.

Our son attends perhaps four hours of school per week. He has experienced trauma in educational settings. He has been bullied by children and educators because his disability is invisible.

This is the smallest window into our lives. I could write so much more, but the reality is – he is one of the lucky ones. He has a family who can advocate for him. So many with disability do not.

The point I also illustrate is this – disability fluctuates. There is simply no way of capturing an accurate perspective of capacity, wellbeing and support needs without a long term and respectful view of the person, their family, their environment and the wider society they live in. An informed perspective and plan for supports that is developed by many professionals over an appropriate period.

I know it is so difficult to imagine this reality when you do not live with a disability or care for someone who does. It is unfathomable to understand a child so anxious he cannot go to school. To picture parents who cannot work at the same time, otherwise there would be no one to care for their child.

It’s hard to imagine a child whose anxiety prevents him from sitting with his family for meals, who misses interactions with other children, but is often too scared to seek them out because failed attempts at being ‘like other kids’ make him vulnerable to criticism, exclusion or punishment.

To the casual observer – or uninformed assessor – my son’s capability and support needs cannot be reliably assessed.

To properly develop supports and therapies that benefit my child, you would need to be with our family and learn from each person’s experience, getting to know us all and the community we live in.

You would need the specialist psychological, speech pathology, occupational therapy and paediatric physician knowledge that our son’s team has.

You would need to build up a picture of our son’s unique abilities and challenges over a long period of time. Over this period of time, you would learn where he is flourishing and where he needs extra support.

You would learn how his parents might be experiencing their own mental health challenges. You would be aware of the complex social, cultural and medical interplay of factors that a person with disability experiences in the world around them.

It is not possible for this knowledge to be reliably informed under the current independent assessment being proposed by Government.

I have included a brief response to the terms of reference, where relevant, below.

a.  the development, modelling, reasons and justifications for the introduction of
   independent assessments into the NDIS;
   There are no valid reasons and justifications for the independent assessments. A point of
    fact is that the model proposed is fundamentally different to the recommendations on
   the Tune Review. It has only served to create fear and anxiety within the disability
  community and beyond.

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b. the impact of similar policies in other jurisdictions and in the provision of other government services;

c. the human and financial resources needed to effectively implement independent assessments; Adding a layer of unjust, ineffective and poorly conceived “assessments” implemented by those not qualified to do so is in no way fiscally responsible. Beyond all the other concerns, it adds another layer of barriers and bureaucracy that benefits no one.

d. the independence, qualifications, training, expertise and quality assurance of assessors; With a few exceptions, the providers selected to implement independent assessments have minimal NDIS experience. Most work primarily in health care, aged care, employment and workplace safety.

There is no way that the training or capacity of one allied health professional could capture all the needs of our autistic son.

The quality and independence of assessors remains to be seen, however these “marketing speak” (read “exclusive invitation”) texts sent to participants to coerce them into participating in the pilot scheme raise alarm bells. This is an actual text message received by me, inviting my child to participate in the wholly unsuitable pilot program.

Independent Assessment Pilot Dear This is an exclusive invitation for to join the Independent Assessment Pilot. Participation in the pilot will help shape the future of the NDIS. To respond and for more information, click this link.

• e. the appropriateness of the assessment tools selected for use in independent assessments to determine plan funding; There is no singular assessment tool that will properly and adequately capture the needs my son has. To attempt to simplify the needs of a human being to one instrument of measurement is wholly inappropriate and wildly disrespectful. It is not possible to quantify the lifetime needs of a person with a disability and it is alarming that it could even be considered.

• f. the implications of independent assessments for access to and eligibility for the NDIS; As shared above in my lived experience supporting a child with a disability, how could an independent assessment truly capture his needs? What if a participant was met on a ‘good’ day for them? Disability fluctuates. Needs and abilities fluctuate. How many eligible individuals could be rendered unable to access support or have their access to supports limited by a short, inappropriate and inaccurate assessment?

An assessment at a point in time does not fit for a lifetime. There is simply no way it can.

• g. the implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports; Reasonable and necessary supports are a key mechanism to provide support. What one participant may need to live a life of quality, freedom and choice will not match another’s. Reasonable and necessary will evolve and fluctuate over time. We hold the valid fear that this an attempt to cut costs and shift financial onus on to the families of those with disabilities.

• h. the circumstances in which a person may not be required to complete an independent assessment; Independent assessments as they are currently proposed undermine the very existence and intent of the NDIS. No person should be required to complete them.

• i. opportunities to review or challenge the outcomes of independent assessments; The very concept of not being able to appeal or challenge the outcome of an independent assessment is terrifying. This contravenes the most basic consumer and human rights.

• j. the appropriateness of independent assessments for particular cohorts of people with disability, including Aboriginal and Torres Strait Islander peoples, people from regional, rural and remote areas, and people from culturally and linguistically diverse backgrounds;

• k. the appropriateness of independent assessments for people with particular disability types, including psychosocial disability; and As outlined in the experience of my son and my family, his psychosocial disability, coupled with autism determines his experience and enjoyment in the world on a daily basis. If an assessment were to occur in our home, when he is calm and regulated the outcomes would be dramatically different to an assessment in a school setting where he

Could be fearful, anxious, panicked or even violent. How could a simple assessment even begin to capture the complexity of his lived experience and the supports he needs to survive, let alone thrive?

l. Any other related matters

I am grateful for the opportunity to share the experience of my family and my concerns to the Committee.

Again, I implore the Government to immediately abandon the proposed Independent Assessments.

The lives of those with disabilities are worthy of joy, security, comfort and wellbeing. All individuals deserve all the opportunities to participate meaningfully in life in ways that suit them and support their quality of life.

It is the responsibility of Government to honour, serve and protect its citizens – not to underline them, limit their possibilities or expose them to neglect, abuse or fear.

Thank you for taking the time to read my submission.

Regards,

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